Tuesday, September 29, 2015

Yesterday this candid piece about being a special-needs dad on LinkedIn blew me away. It's such a rich account of the many emotions experienced by parents of children who don't meet conventional milestones. Author Mike Cook, a manager of Enterprise Services at Dell, Inc. in Oklahama City, said we could reprint it here. Enjoy! Louise

By Mike Cook

I have been blessed with an amazing family, starting with my wife (my rock). She is truly superwoman, and I don’t know how she does what she does, but I thank God for her every second of every day.

Between the two of us, we have four amazing boys.

Our oldest is 22 years old, recently married, and is in Air Force Intelligence. Our 20-year-old graduated valedictorian and was on the dean’s list in college. Our 12-year-old is in all-honours and read the Harry Potter series before he was five.

And last but not least is our youngest, Matthew, who will be three soon and is the happiest little man in the world. I wanted to share about all of our boys so that you realize how blessed we have been with some very bright young men.

At first glance, you would never be able to tell that Matthew is any different from other toddlers his age. No matter where we go, complete strangers always make the same comment: “That’s the happiest little boy I have ever seen.” Matthew always has a smile on his face.

What they don’t realize is that Matthew has major delays in his motor, speech, cognitive, and social skills. The doctors call it global developmental delay (GDD). In layman’s terms and what I tell everyone is: He doesn’t walk or talk yet. Doctors haven’t been able to determine what’s causing the delays yet, but for the last two years, our precious little boy has had to see more specialists than you can ever imagine.

Matthew currently has speech therapy, occupational therapy and physical therapy multiple times each week, and I must admit that raising a child with any type of delay, disability, disorder, condition, or special need is both a blessing and a challenge.

It’s a challenge for the obvious reasons. But it’s a blessing too: You can’t imagine the depths of victory and joy you experience when you see your child's reaction to overcoming his own challenges.

It’s the simplest things, like seeing his eyes light up waiting for you to acknowledge what he did when he puts his cup down softly instead of throwing it; the smile on his face when he climbs off furniture without any help, the clapping of his hands after he uses sign language to say “thank you,” or my favourite—the high-pitched dolphin-like sound he makes when he scoots over and hugs me to say “I love you!” Those moments are when I realize how blessed I am and what life is truly about.

People know me as a very open person who can usually talk to anyone. But what many don’t know is that after Matthew’s issues arose, I rarely express my deepest feelings. Instead, I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband—a strong man—is supposed to do.

I don’t want anyone to know how terrified I have been at times because I don’t want them to feel pity for me or think that I don’t love my son with all that I am. So, I want to share a few things about raising a child who has special needs in hopes of bringing a little understanding to those who don’t know what it’s like.

It’s tiring

As all parents can attest, parenting is already an exhausting endeavour. But parenting a child with special needs pushes us to an entirely new level of fatigue.

Even if I get a good night's sleep or have had time off, a level of emotional and physical exhaustion is always there, from the weight of tending to his needs.

Hospital and doctors' visits are not just a few times a year. They are typically a few times a month. Therapy sessions are multiple times each week. Paperwork and bills stack up, and spare time is spent catching up on cleaning, working with him on trying to crawl or walk, searching the Web in hopes of finding similar cases with cures to help him learn, or advocating for him in the medical and educational systems.

The emotional stress of raising a child with special needs has peaks and valleys that seem so much more extreme than those encountered in regular life. I am always so appreciative of my employer, Dell, Inc., for helping make life easier—from arranging schedules around Matthew’s appointments so I can work from home if needed, to understanding the last-minute fill-ins if my wife may not be able to make a therapy session or doctor’s visit.

It’s scary

I often worry: Am I helping him too much? Am I not helping him enough? What if I’ve missed something—a treatment or a diagnosis, and that window of time to treat it? What about his future?

Will he ever drive a car? Will he ever get married? Will he ever be able to live independently? I fear thinking of the hurts he will experience if he doesn’t catch up and is tagged as “different” by other kids in this harsh world. I am scared about finances. Finally, I fear what will happen to Matthew if anything were to happen to my wife or me.

In a way, I feel ostracized

I feel we are now outsiders due to a fear that something could happen to Matthew because he can’t protect himself the way a “normal” child can. I worry that he can’t say “stop” or “don’t” or that he won’t realize he should have said it until it’s too late. I worry that people simply won’t understand him. I’ve seen the sideways glances and rolled eyes from strangers when he throws food or does something they consider rude or disrespectful, which makes going out to restaurants even more difficult.

When my wife and I go to parties, we end up by ourselves, whether or not we have our little boy with us. If he’s with us, then we’re constantly watching him to make sure he’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above.

If he’s not with us, then we’re worried that something will happen to him away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave him with someone who might not understand what he’s trying to say or sign. Sometimes it’s even too hard to get your own family to understand just how stressed out you are.

I’m ashamed to be jealous

Even with the beautiful family and blessings I have, I can’t help but feel a tiny pang of jealousy at times when a child younger than Matthew runs past me or calls out to his or her parent the way I want to see my son Matthew do.

What’s even worse is that this envy makes me feel as guilty as can be, because I am so proud of everything Matthew has accomplished. This little boy has worked harder than any of our other boys to accomplish everything he has been able to do, but I wish it hadn’t been so hard for him.

I hate when that little pang of jealousy hits me—this so-called “normal” child in front of me didn’t ask for my little boy to have a learning disability. This child doesn’t realize that when he calls out “Daddy,” for a split second, I think, “Why? Why did this happen to my son, and why can’t I hear him say 'Daddy'?" Then I push that thought as far away as possible because these questions are not fair to that child or to my little boy.

If Matthew ever reads this in the future, I want him to know that I have never regretted a second with him. Matthew, you have made me a better parent and a better person. You amaze me every day with every single accomplishment you achieve and the way you are always happy. I only wish I had known what I know now when your brothers were your age, for I would have spent more time with them.

I love talking about my son

My son is awe-inspiring. Some days I want to shout from the rooftop how funny and cute he is or how he accomplished something. Other times, when I'm having a rough day due to being made aware that Matthew is sick yet again, I might not say much.

I don't often share with others, even close friends and family, the depths of what I go through when it comes to Matthew. I feel as if something is always going on, and I don’t want to be a burden or seem negative. I do appreciate when people ask me about my son, but if I'm not sharing, please don't think that there isn't a lot going on underneath, or that I don't want to let you in.

Raising a child with special needs has changed my view on life. Nothing breaks this “lens” more than having a sweet, innocent child who was born with impairments that make ordinary living and normal “performance” difficult or even impossible.

My life with Matthew has helped me understand that true love is meeting someone exactly where they are—no matter how they stack up against what the world thinks they “should” be. Raising a child who has special needs shatters all the expectations that we build our lives around and pushes something else to the core: love and understanding.

I’m human

So, to our friends and family, future friends we haven’t had the pleasure of meeting yet, or strangers who know and love a special needs family somewhere in this vast world of ours:

What can you do?

Strive to include. Work to understand. Go out of your way on occasion to help a family who has a child with special needs. Realize that the stress and strain take their toll. We’re just trying our best to survive. If we seem secluded or if we’ve offended you with our words or our actions, we apologize for our moments of weakness. Hopefully, someday we can move forward together.

We do our best to make our family life look normal and to act like everything’s fine. And yet, we wish people might see through that facade every once in a while and understand that we truly appreciate the slightest effort to make us feel...special, just as our son is special.

Thank you so much for this post. I could have written every word myself and it brings me to tears to see that I am not alone. This is our world. A world that even family can't ever understand or relate to. We share this with one another, us hero parents. We are rewarded with these beautiful children and the love we experience with them. And we live with our deep sorrows every minute of every day in the struggle that is getting through every day. Thank you. Thank you.

I echo Lucas' MOM in saying thank you- you are not alone in those thoughts and feelings. We have been given a gift in our child(ren)and have experienced a level of love, patience and understanding we never knew possible. Sometimes it is a struggle and we look for anyway to make their lives easier- at the same time I would not want a cure as that would change who my little girl is- I only want her future to be easier. Have faith that he will still accomplish great things because he has you and Louise fighting, advocating and supporting him.

Mike and Maggie,It has been my pleasure to know your sweet baby boy. I love how he recognizes me when I walk into Mindy's house and that great smile fills the room. I have seen the fruits of your hard labor as he gently holds my fingers when we walk into the playroom together. God bless all of you. I also have a challenged autistic grandson. And it is a joy to see him make efforts to speak, to understand, to grow. My heart feels like it will explode with the love I feel for him. Getting to see Mathew on a regular basis feels the same way. I rejoice in his accomplishments. You are excellent parents and I know how much you fret about his future. It is a long process, a marathon, not a sprint. I will always be available to my little friend Mathew and to you for hugs of encouragement or a helping hand. Pat yourselves on the back. You are doing a great job.Kathryn Casse

Thank you Ms Kathryn! Matthew is a blessing!!! Like the many conversations we have had ... God must have known that Mike and I are needed to be shaped up, because our little boy has been nothing but "for our betterment".

Yes, it has been an extraordinarily challenging experience, but Matt has taught us more than we are teaching him. He has taught Mike and I to appreciate the little things --- for it's those little ones that brought us to never take things for granted. It is just ad amazing to us to know how God work things out for His greater purpose.

Thank you SO much. I identify with every single part of your article. From worrying about who is caring for my child understanding their needs, the reactions of strangers who don't know "something's wrong," the way I've distanced myself from others without meaning to. Our perspectives are forever changed and yes, we realize how much the world isn't about all the things we spend most of our lives chasing. Thanks again.

Yes! You just described the emotional life I've been living the last 11 years while parenting a child with autism, bilateral hearing loss, & a handful of other challenges. The lows can be pretty painful, but the highs we get from watching them overcome or succeed in even the smallest ways make life pretty amazing!:-)

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